Hi, Sarah
My illness began in July 2010. I was doing aerobics in my living room, when my feet started to hurt. Of course I stopped, thinking the pain would go away. Went to Primary Care dr, who diagnosed me with plantar fasciitis. I was given steroids for one week. It didn't help. I saw a podiatrist. He sent me to physical therapy. I went to therapy three times weekly. On one visit I worked with a different therapist, who had never seen me before. That turned out to be important because she suspected there was more going on with me than just a foot problem. When I saw my regular therapist, he suggested I go see my PC dr again. By this time, I have a new dr, who referred me to a neurologist. The neurologist I saw diagnosed me with GBS Feb, 2011. My dr did nerve conduction studies and a spinal tap. He took me off work that day. Actually considered putting me in the hospital. But, he didn't. I had my first IVIG a week later. My illness was stable from Feb 2011 until May 2011. In May I had a biopsy done. My procedure was on a Thursday. Friday morning, I got ready to go out to breakfast, I thought everything would be okay. Until I fell, trying to climb the steps at my back door. I couldn't stand, or move my legs at all. My husband had to call his brother for help. They carried me to the car to take me to the hospital. I was there for a week. After that I started falling, every day. I had difficulty taking a shower, more difficulty walking, even standing. I was given another round of IVIG. It helped me with standing a bit, walking a little bit. One of the things I found to be most difficult was the pain. I couldn't stand to be touched. If someone brushed my hands, it was incredibly painful. Dr. said it was hypersensitivity. When I got out of the hospital, I went back to physical therapy, and more IVIG. My family and I wondered about the diagnosis, because I really wasn't getting better. The therapist also thought my ability was going downhill as well. When I first started my physical therapy, I used an exercise bike for 5 minutes. That stopped, and I was doing my exercised lying down. I did not have the strength to stand. I saw another doctor, who agreed with the diagnosis and treatment plan I already had. In June I had another fall, went to a different hospital, stayed there for two weeks. They said I needed inpatient physical therapy. I had occupational and physical therapy for two weeks. The therapists at the hospital told me I couldn't walk. I was measured for a wheelchair. I learned how to use a chair, cook while seated, transfer to an from the wheelchair to a car, a sofa and to the toilet. I was given plasmaphersis at the end of July I was still in a great deal of pain, I took 400 mg and 800 mg of Gabepentin three times per day. I also took triliptal and baclofen.
When I was released from the hospital. I went to another doctor. There is a Center of Excellence about 90 miles from my home. The dr at the center diagnosed me with CIDP. My original neurologist stood by his diagnosis of GBS, I had hoped my first neurologist would be able to work with the specialist, but he did not agree with the treatment plan. My new dr is a specialist in CIDP. He prescribed steroids along with the IVIG. I started to see improvement, so did the physical therapist.
Now, the doctors tell me my CIDP is in remission. I have not had any treatment other than Gabepentin 100 mg twice a day. No infusion since August 2012, no steroids either. I take Zantac everyday, the doctor says it is an antiflamatory. I was using a wheelchair in 2011, started using a walker, then a cane. I now I do not use any assist device. I stopped driving in 2011. I started driving again Thanksgiving 2012. I am able to take dance lessons (belly dancing), I still have to be careful about how much activity I do, the muscle cramps can be awful. I found a homeopathic medicine called CRAMP 911 to be very helpful relieving the cramps. You can get it on Amazon. it is a roll-on that you use on the muscle. It works in seconds. really.
If you think you are not being helped by the IVIG or any of you treatments, it might not be the right diagnosis for you. GBS wasn't the right one for me, it was close, just not the right one.
Be encouraged. I got better, so can you.
Much love, Ivy